Understanding the Complexities of Avoidant/Restrictive Food Intake Disorder (ARFID)

By | September 12, 2024

Imagine a world where the sight, smell or texture of most foods triggers intense anxiety or disgust. For individuals with Avoidant/Restrictive Food Intake Disorder (ARFID), this is their daily reality. ARFID, which is sometimes described as “selective eating disorder,” is a complex condition that goes beyond simple picky eating.

It’s characterized by a persistent failure to meet nutritional needs, often resulting in significant weight loss, nutritional deficiencies or even dependence on supplements or tube feeding.

Unlike some other eating disorders, ARFID isn’t driven by body image concerns or a desire to lose weight. Instead, individuals with ARFID may avoid foods due to sensory sensitivities, fear of choking or vomiting, or a general lack of interest in eating. This can lead to a severely restricted diet, social isolation and significant health complications.

As awareness of ARFID grows, it’s crucial for both the public and health care professionals to understand its symptoms, challenges and effective coping strategies.

What Causes ARFID, the ‘Silent Eating Disorder’?

It’s estimated that 0.5% to 5% of children and adults have ARFID,1 which is considered a relatively new diagnosis. It was added to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders — a publication by the American Psychiatric Association that provides standardized criteria for the classification and diagnosis of mental health disorders — in 2013.2

“I would call this the silent eating disorder because it’s very prevalent, but it’s the least studied, and it’s the least talked about, and it’s the least funded at a federal research level,” said Stuart Murray, associate professor of psychiatry and behavioral sciences at the University of Southern California and director of the Translational Research in Eating Disorders Laboratory, told CNN.3

The exact causes of ARFID are not fully understood, but research suggests it likely results from a complex interplay of biological, psychological and environmental factors. Biological factors may include sensory sensitivities, genetic predisposition and neurological differences in taste or smell processing.

Hormone studies have also found abnormally high levels of substances that promote fullness (like Peptide YY, cholecystokinin and oxytocin) and low levels of hunger-stimulating hormones (like ghrelin) in ARFID patients, which may contribute to the disorder’s development or persistence.4

Psychological factors often play a significant role as well,5 with ARFID frequently co-occurring with anxiety disorders, autism spectrum disorders or obsessive-compulsive tendencies. A systematic review published in European Eating Disorders Review found, for instance, that anxiety disorders occur in 9% to 72% of ARFID patients, while autism affects between 8% and 54.75% of people with ARFID.6

Traumatic experiences with food, such as choking incidents, can also contribute to its development. Jennifer Thomas, with the Eating Disorders Clinical and Research Program at Massachusetts General Hospital, explained in Psychiatric Annals:7

“One of the first patients I ever saw with avoidant/restrictive food intake disorder (ARFID) was an 11-year-old girl who presented to my team’s hospital-based eating-disorder clinic with precipitous weight loss. She had recently choked on a pork chop during a family dinner and subsequently developed an intense fear of eating most solid foods. She told me, with wide eyes, that she was terrified to eat even a single grain of rice.

As I took her history, I learned from her parents that she had been a lifelong ‘picky eater’ (with a strong preference for plain foods such as buttered pasta) and had always had a small appetite.

Unlike most patients we saw at our clinic in those days, this girl was extremely distressed by her weight loss and eager to gain it back. Thus, her clinical presentation stood in stark contrast to most of our other patients, whose eating-disorder behaviors were maintained, in part, by an unrelenting desire to be thin.”

Environmental factors, including early feeding difficulties, parental anxiety about feeding or limited exposure to varied foods in early childhood, may also increase the risk of ARFID.8

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Additionally, certain temperamental traits like high sensitivity, rigidity in routines or perfectionism may predispose individuals to develop this disorder. It’s important to note that ARFID can develop at any age and isn’t always linked to a specific triggering event, making each case unique in its origins and manifestation.

What Are the Signs and Symptoms of ARFID?

The condition manifests differently in each person, but there are several common signs and symptoms to be aware of. The most obvious is a highly restricted diet, often limited to a small number of “safe” foods. These safe foods may be of a particular color, texture or brand. Individuals with ARFID might refuse entire food groups, such as fruits, vegetables or proteins, leading to nutritional imbalances.

ARFID goes beyond picky eating, however, reaching debilitating levels of food avoidance. “A picky eater might be able to eat around a certain food on their plate, or they might be able to have a little bit of it,” Murray told CNN. “Somebody with ARFID might not be able to eat anything on the plate if a food that’s deemed to be unacceptable is on the plate.”9

Physical symptoms of ARFID can include significant weight loss or, in children, failure to gain weight or grow as expected. Gastrointestinal issues are common, as are signs of malnutrition such as fatigue, weakness or hair loss. In severe cases, individuals may require nutritional supplements or even feeding tubes to maintain their health.

Emotionally and behaviorally, people with ARFID often display high levels of anxiety around food and eating situations. They may avoid social events involving food, struggle with eating in public or experience panic when presented with new or feared foods.

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Unlike people with anorexia nervosa, individuals with ARFID typically don’t express concerns about body image or weight gain. Instead, their food avoidance may stem from a fear of choking, vomiting or experiencing other negative consequences from eating.

Living with ARFID Involves Health Risks and Social Hurdles

Individuals with ARFID face multiple challenges that extend far beyond mealtime. The severely restricted diet typical of ARFID can lead to significant nutritional deficiencies, potentially causing a host of health complications. These may include:10

Anemia

Weakened immune system

Osteoporosis

Electrolyte imbalance

Low blood pressure

Cardiac arrest

Delayed puberty

Organ damage

Growth delays are common in children with ARFID, while adults may experience unhealthy weight loss and muscle wasting. The body’s lack of essential nutrients can also impact cognitive function, leading to difficulties with concentration, memory and overall mental acuity.

Further, social situations often become a source of extreme anxiety for those with ARFID. Attending social gatherings, or even family meals can be incredibly stressful experiences. This social isolation can lead to feelings of loneliness, depression, and low self-esteem. In professional settings, business lunches or team-building events centered around food can become obstacles to career advancement.

For children and teenagers, school cafeterias and birthday parties can be particularly challenging, potentially impacting their social development and peer relationships. The psychological toll of ARFID shouldn’t be underestimated. Many individuals with this disorder experience intense anxiety around food, which can generalize to other areas of life.

The constant worry about encountering unfamiliar foods or being pressured to eat can be exhausting and overwhelming. This chronic stress can exacerbate existing mental health conditions or contribute to the development of new ones.

Additionally, the misunderstanding and lack of awareness surrounding ARFID can lead to feelings of frustration and isolation, as individuals may feel that others don’t understand or take their struggles seriously. This can create barriers to seeking help and support, potentially prolonging the duration and severity of the disorder. Clare Liedstrand, who suffers from ARFID, told Inspire the Mind:11

“Living with ARFID can feel very isolating. Many social events revolve around food, so it’s nearly impossible to avoid questions about eating. As a result, social anxiety often co-occurs with ARFID because people become increasingly self-conscious about their eating.

This isn’t helped by the fact that our choices are frequently scrutinized by those around us. People often comment on my portion size … or the lack of condiments on my food. While I’m usually open to answering questions and helping people understand, I don’t always want to discuss the details of my disorder with strangers …

Eating privately is often easier than answering questions or hearing others comment … The process of … eating … publicly can be incredibly stressful, which makes doing so an act of courage for many of us.”

Natural Approaches to ARFID Treatment

Treatment for ARFID typically involves a multidisciplinary approach, combining psychological interventions with nutritional support. Cognitive behavioral therapy (CBT), which helps to modify behaviors, thoughts and emotions, adapted for ARFID has shown promising results.12

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This therapy helps individuals challenge and change their negative thoughts and behaviors around food. Exposure therapy, a key component of CBT for ARFID,13 gradually introduces feared or avoided foods in a controlled, supportive environment. This step-by-step approach helps individuals build confidence and reduce anxiety around eating.

Family-based treatment, originally developed for anorexia nervosa, has been adapted for ARFID with positive outcomes, especially for young children.14 This approach involves the entire family in the treatment process, educating them about the disorder and teaching strategies to support the individual at home. Parents or caregivers play a crucial role in meal planning, encouragement and creating a positive eating environment.

Additionally, occupational therapy can be beneficial, especially for those with sensory sensitivities.15 Occupational therapists can work on desensitization techniques and help individuals develop strategies to cope with challenging food textures or smells.

Nutritional counseling is another cornerstone of ARFID treatment. A holistic health care practitioner can work with the individual to gradually expand their diet while ensuring nutritional needs are met.

This might involve creative meal planning, food chaining16 — linking accepted foods to new ones with similar properties — and supplement recommendations when necessary. Some find success with mindfulness and relaxation techniques, which can help manage anxiety around eating.

Yoga, meditation and breathing exercises can also be valuable tools in reducing stress and creating a more positive relationship with food. While recovery from ARFID can be a long process, these natural approaches offer hope and have helped many individuals expand their diets and improve their quality of life.

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